Concern over 'DNA database by stealth' in the NHS

GeneWatch UK says the UK Government’s is looking to build a DNA database by stealth in the NHS in England, according to a new report.

The plan it refers to, proposed by the Wellcome Trust and backed by the Prime Minister David Cameron, is to include the whole genome of every person in the NHS in England in their electronic medical record.

In a statement the group, which is concerned with the ethics and risks of genetic engineering, said that these data will be stored by the new Health and Social Care Information Centre and sold to private healthcare and pharma companies, IT firms such as Google and government-run institutes worldwide, including in the USA and China.

Other personal records stored by the UK Government, for example from social care and education, will be linked to people’s electronic medical records and also shared in future, it adds.

This report comes as the government recently announced that NHS patients’ data will be used by the life sciences industry to help firms understand real world data and in turn help R&D efforts.

These data are meant to be anonymised but this will require a change in the NHS Constitution, which currently protects against this kind of use.

But GeneWatch says: “Claims by the Prime Minister that data will be ‘anonymised’, by removing names, are completely meaningless because identities could be deduced from other information, such as age, medical conditions and postcode, or by comparing genomes with DNA taken from a person’s coffee cup or stored in public databases.”

British health secretary Jeremy Hunt has said he will allow an opt-out, but this will remove people’s right to choose to opt in to legitimate medical research, the group claims.

It believes the objective of the plan is “creative destruction” of the NHS, so that every individual has a personalised risk assessment from birth to death, which can be used for personalised marketing online, massively expanding the healthcare market away from poor, sick people to rich healthy ones.

“Total government surveillance of every citizen and the end of privacy between doctors and their patients are inevitable if a DNA database is built within the NHS,” says GeneWatch UK director Dr Helen Wallace.

“Every adult and their children will be tracked using their DNA, and private healthcare records from the NHS will be sold around the globe. Genes are poor predictors of most diseases in most people and personalised risk assessments will lead to the marketing of fear and medicalisation of vast swathes of the English population. The costs of unnecessary follow-up of misleading risk predictions could bankrupt the NHS and harm the health of vulnerable people”.

Private healthcare company Bupa is one of the first companies to be granted access. The Google-funded gene testing company 23andMe also has an interest in analysing people’s DNA, according to GeneWatch.